From patient to caregiver: Makailya’s journey
Makailya began visiting SSM Health Cardinal Glennon Children’s Hospital for treatment of juvenile rheumatoid arthritis when she was just 10 years old. Now at 25, she is a NICU staff member working across the hall from her first doctor.
“It is surreal. It has come full circle and that was always my goal,” says Makailya Pickrell, MPH, BS, CPST, coordinator of the Family Support Program in the Dana Brown Neonatal Intensive Care Unit (NICU). Makailya was treated at the hospital for more than a decade. “I was here at least once a month for infusions and regular follow-ups and was hospitalized three or four times. It was a three-and-a-half-hour drive each way,” she recalls. But according to Makailya, it was worth it. “My care was a lot better after we transitioned to Cardinal Glennon. I was introduced to specialists other than just rheumatologists.”
The Arthritis Foundation now classifies Makailya’s disease as juvenile idiopathic arthritis. It is an autoimmune disease that causes joint inflammation, swelling, stiffness, and pain and may affect the skin, eyes, and internal organs. The condition is believed to result from genetic and environmental factors.
“There were times when I thought I would never be able to leave my mom’s house. The people at Glennon saved my life,” Makailya says. She remembers the hospital as a comforting place for children. “I didn’t feel like I was in a hospital. It was very welcoming and very friendly, like a family.”
Andrew J. White, MD, was Makailya’s first rheumatologist at the hospital. Last year he was appointed as Chair of Pediatrics at Saint Louis University School of Medicine and Pediatrician-in-Chief of SSM Health Cardinal Glennon, where he holds the Robert W. Wilmott Endowed Professorship.
“It really is a small world,” Makailya says.
Finding her calling
“I wanted to be a doctor for as long as I can remember. I spent my senior year of high school filling out scholarship applications,” Makailya says. “I got a full scholarship to Saint Louis University.”
During her sophomore year of pre-med she revised her career goals. “My health had been steady, then I hit a bump. I was taking a summer course that was very challenging. I was hospitalized with a severe migraine and had stroke-like symptoms. I was unable to put sentences together and speak normally. I didn’t think I would physically be able to handle medical school.”
Makailya still aspired to a health care career and switched her focus to social work. She earned Bachelor of Science and Master of Public Health degrees. An internship with the Safe Kids program at SSM Health Cardinal Glennon led to a job offer. Then the Family Support Program position in the NICU opened. “I thought it would be awesome if I could get that job.” And she did.
The position is supported by a grant from March of Dimes, which promotes maternal and infant health. “We work to improve the patient experience by planning activities for families,” she explains. “We provide courses on nutrition, self-care, preparing for discharge, and other subjects. We conduct individual and group support sessions. We also provide staff education and recognition.”
While most patients remain in the unit just a few days, some are hospitalized for months. “One baby has been here for 284 days. Another is waiting for a heart transplant. We have families who live two or three hours away.” She adds, “I know what it is like to be a patient, so I want to make the experience better for others.”
Our Division of Neonatology includes more than 20 board-certified neonatologists from Saint Louis University School of Medicine who oversee neonatal care at two hospitals. Learn more about The Dana Brown Neonatal Intensive Care Unit (NICU).